Sally Isabella tries to get her daughter, Brooke, to eat her dinner at their home in Lawrenceville. Brooke suffers from a form of epilepsy, and must be kept on a strict diet. (Staff Photo: David Welker)
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A girl’s fight for medical marijuana
Chip and Sally Isabella are considering moving to Colorado to get their daughter Brooke a non-psychoactive form of medical marijuana to treat her seizures.
LAWRENCEVILLE—A war rages behind the 7-year-old’s eyes, as tiny sparks turn to bigger flames in her brain and she just drifts away.
Seconds ago, Brooke Isabella stood outside her bedroom telling about a movie her dad was going to get her, a new film where the characters are cool and “travel to other dimensions!” She jumped up and down and shook her hands, with her straight strawberry-blonde hair tossing on her shoulders.
Now, she stands still. Silence sings as her eyes trail off, unfocused, down the hallway. Her face is blank. Time passes. Then, her leg jerks and her shoulder, too. She turns toward her mother and someone asks, “Are you back?” She says yes and goes on about the movie.
If you ask Brooke what just happened, she might tell you she had a “butterfly.” That’s what her parents call seizures, the seizures that come multiple times a day and rule her life. Often, they are violent, traumatic “grand mal” seizures that cause her muscles to contract and her mind to freeze. More often, they are small, strange “absence” seizures — like in the hallway — which make her black out for a few moments.
If you ask her parents why they still have few effective options for treatment more than a year after these episodes began, they have a word for that, too: politics.
Chip and Sally Isabella of Lawrenceville were among hundreds of parents around Georgia who lobbied state lawmakers to allow the use of a non-psychoactive oil form of medical marijuana for children with chronic seizures earlier this year. The family was devastated when legislators became deadlocked in a back-and-forth, finger-pointing game in March and ran out of time to pass legislation.
The General Assembly plans to take up the issue again during the 2015 legislative session. Talks began this week, with the first meeting of a new study committee, co-chaired by Buford Republican Sen. Renee Unterman.
But the Isabellas aren’t counting on anything. Their faith in their government fallen flat, the family is considering their options and may decide to leave their lives in Georgia behind for Colorado, where a growing group of Georgia families have traveled for medical refuge.
It’s a tough call. Chip and Sally say they don’t have the money, and they don’t even know if the drug would work.
“We don’t know what the right answer is, we don’t know what the best option is,” said Chip. “To go out there on a whim, a 50-50 chance, to relocate to Colorado, it’s a crapshoot, man, and I’m a gambler, but to do all that it’s really hard. I’ve toyed with (Sally) and Brooke going, but what an island they’d be on by themselves. Or (we can) relocate the whole family for $8,000, which we can’t afford to do.”
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The Isabellas say they never planned to be advocates for medical marijuana. They’ve lived a normal family life in their Lawrenceville home during six and a half years since moving from south Florida, focusing on raising Brooke and her 12-year-old brother, Nick.
Things began to change last May, when Brooke had her first seizure. Initially, it seemed like it could be a fluke. The Jackson Elementary first-grader had never had serious medical issues before.
But more seizures came. Around September, her condition took a turn. Her parents found her convulsing in bed. She spent nearly a month in the hospital and her parents started playing a futile “cat and mouse game,” trying to pin down the right cocktail of drugs that would help her.
More than a year later, Brooke is still struggling. Sitting in her living room on a recent sunny day, the 7-year-old, wearing a teal T-shirt with a cartoon character riding a unicorn, had at least five absence seizures in a span of about 45 minutes. Her parents called her name and looked into her eyes, trying to get her to snap out of it. When she came back, she hadn’t heard anything they said.
At 7, Brooke only has a basic understanding of what’s happening to her. She doesn’t yet seem to grasp how different she is from the other kids. But, slowly, that day is coming.
“When we’re taking the medicine, she says ‘I don’t know why we’re taking this, they don’t work anyway,’” Sally said, after sending Brooke out of the room to keep her young ears from the conversation. “Last night…she had one and she got tears in her eyes and she said, ‘I just don’t want to have them anymore.’”
Brooke isn’t allowed to go play dates with other kids, go down slides on playgrounds or walk down the stairs by herself, all because of what could happen if she had a severe seizure at the wrong moment.
“She sees that,” Chip said. “She knows. And it’s going to get worse. I’ve talked to parents. When they get to be 8, 8 and a half, the kids really start to put their finger on what’s going on.”
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Rage coursed through Chip’s veins as the clock ran out on the legislative session on March 20.
“I was disappointed, he was angry,” Sally said. “Very.”
Chip had watched the final minutes live online, as the House and Senate each began to blame the other for not voting on different versions of a bill that would have lessened restrictions on medical marijuana. When he tuned in that night, Chip was hopeful. For weeks, he had seen lawmakers across the state slowly turn toward supporting the measure.
Chip and Sally had signed up for a program in Colorado that produces “Charlotte’s Web,” a popular oil form of marijuana that does not intoxicate the user. Brooke’s batch was going to be ready in October, and the Isabellas were going to have it shipped in.
“I was thinking we could be saved,” Chip remembered. “This could be it, we keep our family in Georgia. We’ve been here six years, we have a lot of family and friends. (We) won’t have to spend thousands of dollars that we don’t have (and move with) no support system, no family.”
At about midnight, it was over.
“I just don’t understand it,” Chip said. “Go ahead, Mr. and Mrs. Politician, give your kid seizures for a week and you tell me (to get over this).”
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Of the legislators taking the brunt of the flack after the failure was Unterman, who had supported the Senate’s addition to the bill of language to mandate that insurance companies offer coverage to children with autism, language the House largely didn’t support.
“The house did a very good job with their publicity,” the Buford Republican said Friday, adding that she’s a longtime child advocate. “Am I the scapegoat because I’m the chairman of the committee? I guess I am.”
She added: “In the end, it was very, very disappointing and we all felt bad about it.”
Drawing on that disappointment, she and others are getting to work early this year. The new committee Unterman co-chairs with Macon Republican Rep. Allen Peake, the House’s most stanch active advocate of medical marijuana, is planning meetings into November to search for an effective tact to take next year.
“I don’t know what’s going to happen,” Unterman said, adding that one glowing issue she sees is deciding how to get around federal law against marijuana.
The Isabellas might not wait around to find out. In the next few weeks, they’ll be having more serious discussions about what to do in October, when Brooke’s medicine is ready — to uproot their lives in hopes of giving Brooke some relief, or to stick it out to see what Georgia’s legislators can come up with.
Neither option sounds good to them, but they say something has to give with Brooke. Doctors have told them that after having repeated seizures for a year, children Brooke’s age can begin to stall in development and can begin to regress in cognitive abilities. September will make a year since Brooke started having seizures everyday.
“This can’t go on,” Chip said.
For Lawrenceville family, sting of failed medical marijuana fight still lingers
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